Another trip on the roller coaster

FormerMember
FormerMember
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To recap, I was doing fine at 2 years plus post-transplant. At my recent outpatients, they didn't like my blood counts, so I was called in for a bone marrow biopsy. The full results aren't back (they don't have the genetic profile yet, if that is the right term) but there are leukaemia cells there. The plan is that I go back in for 4-6 weeks and have some 'mild' chemo and some lymphocytes. They will see how I do on that, though they have to check first if I am fit enough, so ECG on Friday.  Alternative is twice weekly visits to outpatients for maintenance treatment - I really don't fancy that at all.  I felt consultant was cautiously optimistic that I wouldn't have to do the whole SCT cycle again.

Lots of packing to do.

Tessa

  • Oh Tessa, so sorry to hear your news.

    An optimistic Consultant is good, rather than a doom and gloom one.

    Let’s look for them to get the very best plan put together and move this in positive way. Yes, you don’t want to be on the Allo SCT journey a second time, yes it has worked for me so far (4 years post next month) but I would only recommend the second hit as a last resort. 

    ((hugs)) xx

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Oh Tessa,

    what a bummer! But I really hope they can hit it and manage to keep leuks at bay.

    sending you lots of love and big hugs xxx

    Moomy

  • Oh Tessa!  I am so, so sorry to hear this. It's crap!   I had so hoped there was a straightforward answer for you. 

    Thinking about you and hoping they can knock this on the head.  It's crap, crap, crap. 

    Sending tons of love.

    Sheri xxx

  • Oh no... as you say a rollercoaster and the same for how you must be feeling emotionally at the moment.. it’s the news we all fear when we have bloods done at the clinic appointments. 

    It’s a matter of dusting yourself down and going again with some treatment. I would be like you and go for the hit it hard approach over a few weeks. 

    ‘You have done it before so this time you will do it again and boot the leukaemia out again!

    Paul

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  • FormerMember
    FormerMember in reply to Paul1969

    Thanks all for support. Im feeling resigned to it all. At least i have some practice now. It was a complete surprise as id been doing so well. 

    Tessa

  • Tessa,

    Really sorry to read your terrible news, I am really feeling for you at what must be an incredibly difficult time. I am hoping that you can find that mindset that Mike talks about - the “what’s next” mindset - even if you didn’t think you would have to find those reserves, I’m really hoping you can tap into them now.

    Greg

  • Hey Tessa, 

    So sorry to hear this so just wanted to wish you good luck. The journey certainly is a rollercoaster but you’ve done it before. Sending big hugs. 

    Regards

    Mark xx

  • FormerMember
    FormerMember

    Oh no Tessa. I'm so sad to hear this. Fingers crossed it isn't the full-blown sct again. What type of  leukemia? I know for relapsed AML there are good results with glitertinab. 

    We're here for you, dear Tessa. Hang tight!

    Love,

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks Alissa. I will write that in my book. I am hopeless with medical words but give me a Latin plant name and it rolls off my tongue

    Yes it is AML they are planning to use a drug that worked before.. it seems its my genetics that get in the way which is ironic since I spend so much time studying my family history. 

    Tessa

  • Tessa, I am remembering a conversation I had with Debbie Richardson, in a meeting before my transplant, when we discussed the role of FLT3 inhibitors. 

    Sorafenib was not then licensed on the NHS for AML, but was licenced for use in other cancers.  It seemed to be having promising results for keeping AML relapses at bay in trials, though.  Debbie said that the company who produced it had agreed to release it for AML patients who met the criteria that were similar to your own.

    I had the conversation 2 years ago and the status of this drug may have changed again since then - but something else to discuss with the team. 

    I do family history too - and gardening!  Still trying to confirm the identity of my great-grandfather, after more than ten years at it!  Great-grandmother was a right one:  the wife of a Thames waterman and we still don't know which of several brothers was actually my grandmother's father.  She left my grandmother with 23 half or step brothers and sisters!  When I am next in London, I shall go to Camberwell Old Cemetery, stand in front of her public grave and wag my finger at her! 

    Sheri